Kidney conscious

For more than three decades, thousands living in the hot spots in Sri Lanka have suffered from a disease that destroys their kidneys. Mostly men living in poor agricultural community are affected with this disease where their kidneys become irreversibly damaged -- until they die.

Chronic Kidney Disease (CKD) is a painful disease resulting from uncontrolled diabetes and hypertension, the most common causes of the condition worldwide. Some other conditions that affect the kidneys are Glomerulonephritis, inherited diseases, such as polycystic kidney disease, malformations that occur as a baby develops in its mother’s womb, obstructions caused by problems like kidney stones, tumors or an enlarged prostate gland in men. Early detection and treatment can often keep chronic kidney disease from getting worse. When kidney disease progresses it may eventually lead to kidney failure, which requires dialysis or a kidney transplant to maintain life.

However in the last three decades, quite a lot of bread winners of families in North Central province died due to kidney failure baffling the health officials because of the absence of identified causes for CKD. Not only the cause of the disease remains a mystery to date but also the true number of Chronic Kidney Disease of unknown etiology (CKDu) cases remains unknown. Since then CKDu has emerged as a significant contributor to the burden of chronic kidney disease (CKD) in rural Sri Lanka.

“Early 90s in Anuradhapura we found patients with similar symptoms but without other non communicable diseases that cause CKD. The patients were from certain villages of Madawachchiya, Padaviya and Kebithigollawa areas. Patients were mostly seen in dry zone and mostly affected were paddy farmers aged between 40 to 70 years. Affected were also predominantly males,” Renal Disease Prevention and Research Unit’s National Coordinator, Dr Asanga Ranasinghe explained.

In the global scenario, the numbers are highest in four equatorial regions around the world -- Central America, India, Egypt including Sri Lanka. Recently the regional epidemiologists have recognized their similarities in this unique form of CKDu. Rates of the disease in Central America are fairly widely acknowledged, with 46% of male deaths in the region of Chichigalpa, Nicaragua, over the past decade thought to be caused by CKDu, according to La Isla Foundation. In Central America, most affected have been men farming sugar cane.

Sri Lankan authorities having had enough of the mystery which took away thousands of lives convened experts from around the world to find answers, in collaboration with the World Health Organization. “As Sri Lanka did not have sophisticated laboratory facilities we convened international experts including the World Health Organisation,” Dr Ranasinghe said.

A Presidential Task Force on CKDu was set up in 2014 to provide oversight and coordinate the efforts of various sectors, agencies and ministries towards the prevention and treatment of CKDu. In this context, the World Health Organization (WHO) Country Office for Sri Lanka and Presidential Task Force jointly convened a three-day international consultation to guide future direction for addressing CKDu in Sri Lanka in 2016.

Participants comprised 54 national and international clinicians, researchers, epidemiologists, toxicologists, agriculture scientists, social scientists, hydrologists and other experts who represented the geographical and etiological dimensions of the disease. Experts came from Sri Lanka, India, the United Kingdom, Australia, Cuba, El Salvador, Finland, Sweden, Canada and Costa Rica. The International Society of Nephrology, Sri Lanka Society of Nephrology, international and national universities, public and private research institutes, National Science Foundation, Coordinating Secretariat for Science, Technology and Innovation, Ministry of Health and WHO were the key organisations represented.

The consultation aimed to develop consensus on research priorities and cost-effective interventions for prevention and management. The objective was to review the knowledge on CKDu globally and in Sri Lanka, identify gaps, prioritize an interdisciplinary collaborative research agenda and recommend interventions based on the available evidence. The Consultation also aimed to develop consensus on the monitoring and accountability framework for implementation of the recommendations.

Dr Ranasinghe stresses that research is vital to identify the causes of CKDu. “Quite a lot of studies, experiments and research have been done to find the causes. Extensive research should continue for both preventive and curative methods as we are dealing with an unknown etiology. At present almost all Lankan universities are supporting our work. CKDu is a slowly progressive condition. It is asymptomatic until advanced stage and results in gradual loss of kidney function thus it is vital to find out the initial cause,” Dr Ranasinghe said.

As Renal Disease Prevention and Research Unit’s National Coordinator, Dr Ranasinghe is taking untiring efforts to tackle the dreadful outcome with just 14 staff in Anuradhapura. “Currently we are screening people with standard methods using urine and blood. In initial stages medicine is not needed but we change the lifestyles of people. Screening is currently carried out in 12 districts for early detection and at the same time we are upgrading the curative facilities including clinics, dialysis and transplant,” he explained.

Google mapping

He further added supplying of purified water, creating awareness through leaflets and educational programmes as other initiatives that are being carried out at present. The most impressive effort taken by Renal Disease Prevention and Research Unit is Google mapping of the CKDu patients of the country. “With GPS mapping and CKDu surveillance any involved party can get the idea where exactly to provide RO plants, dialysis machines or other necessary equipment. All information is available on ‘Sri Lanka Renal Registry’ - a live web based system and most of it is accessible for anyone interested,” Dr Ranasinghe said.

Meanwhile, Presidential Task Force for Prevention of Chronic Kidney Disease which was established with direct guidance and instructions of President Maithripala Sirisena enhances facilities of welfare and preventative matters to patients affected with CKDu.

“According to the National Plan we facilitate and coordinate work done with regard to CKDu. Early detection of the condition and preventing the spread, facilitating treatment to the affected, welfare of the patient’s family and community, supplying clean drinking water, promotion of toxic free diet, developing an upgraded database and facilitating research and policy making are some of the services we provide,” Presidential Task Force for Prevention of CKD, Project Coordinator, Stefhan Fonseka said.

“Renal Disease Prevention and Research Unit of Ministry of Health with the support of the Task Force carried out pilot screening parallel to national programmes in Dehiaththakandiya, Wilgamuwa, Giradurukotte, Mahiyanganaya, Monaragala, Padavisripura, Gomerankadawala, Seruwawila, Morawewa, Mannar and Vauniya where most vulnerable people reside. Until the government is able to provide pipe borne water to the areas in dry zone, purified water will be provided through RO plants. Allocations are already given to Sri Lanka Navy to install and maintain the plants in identified areas,” Fonseka added.

However the question is while actions are taken on priority interventions for CKDu whether the families of the deceased are taken care of. The debate will continue on the initial cause and the answer to the mystery is still years away.

While investigations are underway to identify the cause the officials agree that the provision of safe drinking water and early diagnosis are important priorities. As initial symptoms of the disease are non-distinct, people seek medical care usually late, when damage to the kidney is extensive and irreversible. The only option at this stage is dialysis, which is not always available or accessible as most of the affected are poverty stricken. Thus facilitating early diagnosis at the community level, expanding resources to enable treatment, while the detectives continue their investigations is essential.

Research

Commendable work is currently being carried with intervention of both the government and medical experts of the country. “Building an International Research Centre especially for CKD research was commenced at the Peradeniya University premises with grants from Chinese Government. An MoU was signed between Ministry of Health and Chinese Academy of Sciences in October 2016 to conduct research to find the cause for CKDu. The research collaboration has already begun jointly with the Renal Disease Prevention and Research Unit of Ministry of Health, Chinese Academy of Science and National Science Foundations of both countries. As per the MoU the Chinese government will donate fully equipped, highly expensive, sophisticated state of the art mobile labs for CKD screening. Further the Chinese Academy of Sciences has coordinated training of local doctors, nurses, bio medical engineers/technicians and Public Health Inspectors from CKDu affected areas in Peking University First Hospital and Centre for Disease Control in Beijing in 2017,” Consultant Community Physician of Renal Disease Prevention and Research Unit of Ministry of Health, Dr. A. Pubudu de Silva said.

He further mentioned that Australian Nuclear Science and Technology Organization (ANSTO) through Presidential Task Force is collaborating CKDu research with Renal Disease Prevention and Research Unit of Ministry of Health. In addition Australia’s Shanthi Foundation (a charity organisation) is going to establish a Palliative Care Centre for terminally ill CKD and Cancer patients in Anuradhapura. “When completed it will be the first eco-friendly Palliative Care Centre in South Asia,” Dr. de Silva pointed out.

The Ministry of Health has taken measures to increase the haemodialysis facilities, transplant facilities and to introduce automated peritoneal dialysis (home dialysis), Dr de Silva said. “The automated peritoneal dialysis machines will capture relevant information including weight, temperature and blood pressure of the patient. Doctors can evaluate and monitor the patients from the hospital with the use of these machines,” he said.

With all international assistance and future research priorities in clinical aspects: early detection, treatment and care; role of agrochemicals; role of water/heavy metals; and role of heat/stress/dehydration and miscellaneous hypotheses in mind, country hopes for a better future for CKDu patients.

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